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Being Chronically Mommy...

Welcome to the second in my chronic pain blog series. My first was my most well-known about my life struggle, balance, etc. with chronic pain and illness in "I Already Gave My Right Arm To Be Ambidextrous!" It is now titled "Now Read My HIPS!" and the focus has changed a bit to be more about how I am a woman with several joint diseases and conditions with a shoulder replacement and two hip replacements and am belly dancing! Visit Now Read My HIPS! to follow that entertaining, fun journey ( I also have a Blog Talk Radio Show with the same title about chronic pain and healing.

This blog is a little bit different. It has been focusing on my being a mommy and having a chronic illness. I have been and will continue to focus on health and pain info as well that I once wrote about in Now Read My HIPS! I think it is important to separate this from the rest of my life. It is not easy to have a chronic illness, but adding a child to the mix certainly has its share of trying times as well as beautiful, unforgettable moments.

I am so grateful for our little boy Mick. I can't believe that he is 6 years old as of December of 2016. Time has flown by! He is a dream come true. He has completed my confusing, complicated life. In a very huge way, he has made my life a lot more worth living. Although I have a wonderful husband, we always wanted a family, and I feel like we are now complete and happy. I have something to wake up to, and I have something to live for~Mick! It really is it's own microcosm of my life~Being Chronically Mommy!

...Being Chronically Mommy!

...Being Chronically Mommy!
...Being Chronically Mommy!

Baby Ticker

 Baby Birthday Ticker Ticker
Help, I need somebody,
Help, not just anybody,
Help, you know I need someone, help.

When I was younger, so much younger than today,
I never needed anybody's help in any way.
But now these days are gone, I'm not so self assured,
Now I find I've changed my mind and opened up the doors.

Help me if you can, I'm feeling down
And I do appreciate you being round.
Help me, get my feet back on the ground,
Won't you please, please help me.

And now my life has changed in oh so many ways,
My independence seems to vanish in the haze.
But every now and then I feel so insecure,
I know that I just need you like I've never done before.

Help me if you can, I'm feeling down
And I do appreciate you being round.
Help me, get my feet back on the ground,
Won't you please, please help me.

When I was younger, so much younger than today,
I never needed anybody's help in any way.
But now these daya are gone, I'm not so self assured,
Now I find I've changed my mind and opened up the doors.

Families are Forever

Blog with Integrity
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Saturday, April 13, 2013

April edition of the Patients for a Moment (PFAM) blog carnival--The Stresses of Chronic Pain--Misconceptions and Stigmas!

Misconception--n--a false or mistaken view, opinion, or attitude

Stigma--n--a distinguishing mark of social disgrace; a small scar or mark such as a birthmark; any mark on the skin, such as one characteristic of a specific disease; any sign of a mental deficiency or emotional upset

The most wide-spread misconception about chronic pain is that it results from a psychological disorder. Other misconceptions are that those with chronic pain should be able to tolerate their pain better as time goes on, that they are using pain to get narcotics, and that they exaggerate their pain to gain something like sympathy or money. There is a real catch 22 dilemma too. If they talk about their pain, they risk being labeled as hypochondriacs or fakers, and if they hide their pain, others will think their pain is insignigicant. It is so stressful that even the most stoic person will show signs of how taxing it is on a person. Chronic pain patients suffer daily from guilt, demoralization, and depression due to the negative perceptions of other people. You have probably heard the saying, "Pull yourself up by your bootstraps." For a chronic pain sufferer, you can't just talk yourself out of the pain. Then of course we have the patients who truly believe they must have sinned. They ask themselves everyday what they did wrong to endure chronic pain. Some call this "Job" Syndrome. 

There is an overall agreement with patients of a generalized frustration about the public's perception of chronic pain. When the public tells you that you look fine so therefore you must be feeling fantastic, this says that pain is something that is worn on the outside when it really is something we wear on the inside. Men put more emphasis on how chronic pain affects their work, and women put more emphasis on how it affects their relationships. That makes sense though. Well, it does to me as a woman. I am worried if he will still love me like this, and he is worried if he can sit at his computer to complete his workday. Our coworkers, family and friends manifest their perceptions in so many ways, such as raising their eyebrows at you at work, a friend asking why you aren't feeling better yet when it has been a week, and even family members making the decision to turn their heads and minimize the problem. We have staggering statistics out there that one in three Americans suffes from chronic pain. Even with these statistics, there are societal biases in the workplace, restaurants, and even movie theaters. They are all designed for pain-free people!
People who suffer from chronic pain say that a huge factor behind the stigma is the invisible nature of most chronic pain, " You don't look like you're in pain." When people have easily visible proof of pain like swollen joints, canes, wheelchairs, braces, etc, they tend to report that the evidence of pain offers them validation in the eyes of others. If someone asked the question, "What does pain look like?" The answer is really more the visible evidence of the pain. You cannot actually see pain. 

Stigma comes from the health care professionals, family, friends,  the general public, the government, insurance companies, and even from chronic pain sufferers themselves. It can arise from within. Pain sufferers often experience guilt and therefore they blame themselves for their own pain. Health care professionals often present psychological obstacles for chronic pain patients. They believe the patient didn't follow the instructions, is receiving financial or some other secondary gain from receiving pain meds, or that the the patient is imagining the pain. Patients tend to go from one doctor to another to find relief with the burden being on the patient. Some doctors may focus too much on helping patients accept their pain and not enough on finding ways to help the pain. Why can't doctors work on treatment plans instead of telling patients they will have to just learn to live with the pain? This can lead to family members, especially spouses, feeling a sense of frustration that they can't do more to help the pain. Families tend to go from one extreme to the other, from gushing over the patient to acting angry even rejecting him. Many patients, especially as children will cope by hiding their pain. They fear rejection. Some parents will refer to the chronic pain as the "growing pains". People are afraid of people with chronic pain because they look so normal. They are afraid they could end up in the same scenario. They don't know how to act. They also fear they will "catch it".

"God I envy your life!" You hear this a lot because you may not have worked full time in the last two years. So many people just can't relate to what life would be like with chronic pain, and it just seems easier. Also, there are problems when you are job hunting. They may look at when you had those long periods of time where you didn't work. They will interpret that as a red, or warning, flag. You might be told that there is someone more qualified for the position than you. Chronic pain cannot be objectively validated like cancer, heart disease, or stroke. It can be more easily dismissed by employers and employees. 

Inaccurate information about arthritis persists and is often spread. Such as:

  • Arthritis is an old person's disease.
  • Arthritis is induced by a cold, wet climate.
  • Arthritis can be cured.
  • Arthritis is caused by a poor diet.
  • Arthritis consists of only minor aches and pains.
  • "You felt fine yesterday....why so tired today?"
  • "You have arthritis, you can't......"
Unfortunately, our misconceptions can become barriers to good pain relief. Some of your ideas about the use of pain medications may be based on these common misconceptions.

  • I Will Become Addicted
  • I Will Run Out of Pain Relief Options if I Begin Treating Pain "Too Early"
  • I Should Just Try to Stand the Pain 
  • Some of the Side Effects of Medication Are Just as Bad as the Pain
Pain patients are speaking out more publicly and getting more publicity. On a local level, they are banding together in support groups to fortify each other. It is only a matter of time until this expanding vitality impacts the public consciousness to finally put an end to the stigma of chronic pain.  



Unknown said...

You make an excellent point about how the health care system more often tells us to "live with our pain" instead of helping us manage it. They label us as "problems" if we decide we want more than just advice to treat our pain, and say that "doctor shopping" is a red flag. They really need to walk a mile in our shoes!

Dana Morningstar said...

Exactly, Selena! Thank you!

kate said...

As a sign of gratitude for how my son was saved from fibromyalgia , i decided to reach out to those still suffering from this.
My son suffered fibromyalgia in the year 2013 and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, he always complain of joint stiffness, and he always have difficulty falling asleep . we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony by someone who was cured and so many other with similar body problem, and they left the contact of this doctor who had the cure to fibromyalgia . I never imagined fibromyalgia has a natural cure not until i contacted him and he assured me my son will be fine. I got the herbal medication he recommended and my son used it and in one months time he was fully okay even up till this moment he is so full of life. fibromyalgia has a cure and it is a herbal cure contact the doctor for more info on on how to get the medication. Thanks for reading my testimony.

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